Tuesday, April 24, 2012

Sigh of Relief

Okay, so an update is in store and I can happily start it off by saying that we have a plan!  Hooray!

Today we met with Dr. Meghan Granger in Ft. Worth, who is a neuroblastoma expert.  I fell in love with her; she's great.  She was able to answer all of our questions and even some random ones that I've had for a long time.  But best of all, she reconfirmed our plans for surgery at MSKCC in NYC.  She said that if Case were her child no one would be allowed near him with a scalpel except for Dr. La Quaglia (pronounced la-qual-ee-ah).  She confidently said that he is hands-down the best neuroblastoma surgeon in the WORLD.

She recommended a biopsy with a "de-bulking" procedure.  She definitively said "do not let anyone touch his pancreas!"  I told her that we didn't have Dr. L's surgery plan yet and what if he came back saying he wanted to do the Whipple.  She said that would never happen, that Dr. L is conservative and "better than that."  She said that he will be able to open Case up and know right away just by looking exactly what he can do.  And, as a side note, it will not take him 20 hours to do it!  Yahoo!

A biopsy of the removed parts will be taken to see where the tumor is in the malignancy spectrum.  If results show that it is "differentiated" and maturing into benign cells (from neuroblastoma <bad/malignant> to ganglio-neuroma <good/benign>), then we can monitor from there.  That would consist of a scan 1 month after surgery, followed by scans every 3 months, and the urine catecholamine test every month to measure neuroblastoma levels.  If the cells are still in the "bad" range, we can follow up with a few rounds of chemo.

However it turns out, she was confident that Case would do great.  She spoke with a surety that he would be fine and would make it through this mess.  He is in the "intermediate" group and, fortunately, does NOT fall into the high-risk category that almost always relapses and has low survival rates. 

So we feel great!  And it feels great to feel great!  Dr. L is out of town later this week, so there is no reason for us to go up to NYC for a consultation now.  They feel that we can just schedule surgery and go up a few days early for appointments.  Right now, we are looking about 2 to 3 weeks out.  I felt a heavy load lifted when I realized we weren't going to be doing a last-minute, harried trip up to NYC.

Prayers are answered.  Heavenly Father has a plan for us all.  When we let Him guide us down those paths, our lives are easier.  Looking back at the tender mercies is always a treat!  Good night!

p.s. to everyone who has offered help in NYC with friends and contacts and whatnot, you all ROCK.  I don't know what we need right now, so hang tight until we do!


  1. Yay!!! What a huge blessing. We'll be praying for you.

  2. How wonderful to have the best for your sweet boy - and what a blessing to get such good news - you deserve it! Good luck with everything and keep us posted!

  3. I'm so happy to hear everything is working out this way with the worlds best surgeon and everything. We love you and will continue to pray. Ronald Mcdonald house rocks. We stayed there for a week and what an amazing charity they are. Let me know how I can help my dear! XOXO

  4. So grateful for this positive news. What a blessing to have the best of the best performing surgery on the best of the best! :-) Our thoughts and prayers are always with you guys.
    Thank you for your continual updates. I love knowing what is going on with sweet Case.


  5. What wonderful news to hear tonight! It has been amazing to watch how you have been led to the people you needed to find! We will continue to pray and please let us know how we can help. Sending lots of love! The Edwards

  6. Oh this is so wonderful!!! What a relief to not only have a plan, but the BEST plan! What an amazing blessing. I am so happy for you and so grateful that you have been led to the right people for Case. Love all of you and we will keep praying and thinking of you!

  7. Wow...could the news be any better? I am so grateful for the great outlook on Case's recovery. Even though you still have much ahead, it is so great to know that you are well on the right track and that he has responded so well. I am also so glad that this doctor in New York is the best in the world. Prayers are answered!

  8. I just wanted to say that my son has neuroblastoma also, and dr granger is his doctor. She is wonderful!